It has been a lot over the last month and time feels like a blur.
We started PD. I am so thankful for modern medicine and science. It is literally his lifeline for living and I would be a widow without it. We received about 30 boxes of the PD solution.
This coming week we will start training to make sure we can finish PD at home safely. Eventually we will be getting a machine so my husband can do PD while he sleeps. I can’t say enough good things about BC Renal. All his medical supplies from masks, gauze, and bandages have been completely covered by BC Renal. Yes, we now also do wound care at home. Solutions, medicines, and other items are similarly covered. I want to partner with them. I will also advocate soon, once the dust in my life settles.
We were finally given a diagnosis after going through a kidney biopsy. My husband was diagnosed with IGA. IGA has a potential genetic part but appears to happen more often in Asian and White European men. You would think that we would be upset by this diagnosis. Still, we both agreed we prefer to know the devil we face.
Tyler continues to attend his dialysis appointments 3x a week. We will be doing iron infusions by IV soon thanks to Kidney Failure causing anemia. Yeah, it has been fun. Some days are better than others.
I usually work in mental health. This has been a lot for me to process. The hardest part for me is not having to do the lifting. It’s bearing witness to all of his suffering. I can’t escape or turn away because I have to monitor for his toxins poisoning his brain. I help people with caregiver burnout for my day job. Now I see how complicated it can be. I experience its all-consuming nature first hand. The witnessing of suffering is the worst part. I find myself using my therapy skills to help me sort life. Kidney failure changes everything for the family affected. I still take care of him with loving pride.
I am a positive person but I am forcing myself to slow down and smell the flowers more. Hold your loved ones tight because disease does not give a crap about your age. Take care of yourself – health is wealth. Attend your doctor’s appointments and get your labs done. Tyler would have never known he was dying if he had not done his labs.
I will be getting tested soon to see if I am a potential donor match. IGA requires a donor for Tyler to live a normal life. It is a treatment, and there is not a cure for IGA.
Finances have been fun because my employer likes to make the govt wait for paperwork. I appreciate everyone who has donated to the GoFund Me because I will be using it. I do miss my workplace and my co-workers though.
If you are a family member or a friend and you are reading this, please let Tyler know. Let him know if you are interested in being tested to see if you are a donor. The more related matches we have – the better potential match.
Thank you for your ongoing support.
❤ Cass & Tyler
Kidney Soul 